This is a book review by Beau Nieuwenhuijs, Regional Carer Engagement Lead (West of Scotland.

A few months ago I came across a BBC article titled “my lovely dad tried to kill me”. Sensationalist as I am I clicked on it straight away and after reading it I knew I wanted to read Robyn’s book about her experience moving back home at 25 to care for her dad with young-onset Alzheimer’s. There’s something about the way she writes that’s almost inappropriately funny (her own words but very true) and extremely relatable. The same goes for her book ‘My Mad Dad: the Diary of an Unravelling Mind’.

Apart from my age I have very little in common with Robyn at the time she wrote this diary. The book starts with a hungover Robyn leaving her Camden flat with several people still passed out, surrounded by empty vodka bottles and cartons of cigarettes. I, on the other hand, hate being drunk and get genuinely excited if I’m in bed by 10pm during the week (11pm on a weekend). Robyn grew up exploring the world before her family settled in a tiny village in Wales, with vast and beautiful landscapes with mountains and valleys. I grew up in an urban area of the flattest country in the world, and occasionally went exploring the nearby windmills. Robyn moved back home, I moved to a different country. Robyn’s mum had an aggressive form of cancer, which was discovered late, couldn’t be treated and ended up being fatal. Mine had a form of cancer that wasn’t aggressive, that was discovered early, and got cured within 9 months of diagnosis. Robyn’s dad was diagnosed with young onset Alzheimer’s which caused severe behaviour and personality changes, had a rapid decline and needed to be looked after round the clock by his two children. Mine is strong and healthy and continues to be the biggest support for me and my younger sister.

I’m making this comparison to illustrate how unfair life can be and what a bad hand Robyn got dealt. It also says something about Robyn’s way of writing. Even though I can’t really use my own experience to understand what hers must have been like, I felt like I was there with her. I was there when everything was fine, because she couldn’t and didn’t want to admit to needing help. I was there when everything fell apart when her mum died and her unknowing dad was dancing the conga at the wake. I laughed with her (a lot), I cried when she finally did, I felt empty with her when there were no words to describe what it was like to lose two parents in only a matter of months and be all alone surrounded by people. I felt about a million other emotions that I don’t have the words for. I felt different after reading this book. It added another layer to my understanding of dementia and caring for someone with dementia.

Reading ‘My Mad Dad’ also gave me hope. It showed that your life can change in a moment and that, once it does, it will never be the same. We have to live with the terrifying knowledge that at any moment in time you can get a phone call that someone you love has been hurt or is ill. Hers is not a pretty story, it’s a very real account of going through the darkest times, hitting rock bottom and going even further. Yet Robyn left me with a feeling of ‘if she can do it, I can do it’ simply because she was brave enough to share her raw and honest truth.

Here at tide we want to continue to support you through these difficult times. Following government guidelines, we have cancelled all face to face events. However, as a team, we are here to support you.
You can join us in our new Facebook Private Group where we will be outlining plans of how we intend to keep our carers connected.
Don’t have Facebook? Email us at carers@tide.uk.net

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